TY - JOUR
T1 - The HI v O pen Call on i nformed C onsent and e thics in Research (VOICE) for Adolescents and Young Adults
T2 - A Digital Crowdsourcing Open Call in Low- and Middle-Income Countries
AU - Day, Suzanne
AU - Tahlil, Kadija M.
AU - Shah, Sonam J.
AU - Fidelak, Lauren
AU - Wilson, Erin C.
AU - Shah, Seema K.
AU - Nwaozuru, Ucheoma
AU - Chima, Kelechi
AU - Obiezu-Umeh, Chisom
AU - Chikwari, Chido Dziva
AU - Mwaturura, Tinashe
AU - Phiri, Nomsa
AU - Babatunde, Abdulhammed Opeyemi
AU - Gbajabiamila, Titilola
AU - Rennie, Stuart
AU - Iwelunmor, Juliet
AU - Ezechi, Oliver
AU - Tucker, Joseph D.
N1 - Publisher Copyright:
© Lippincott Williams & Wilkins.
PY - 2024/5/1
Y1 - 2024/5/1
N2 - Background Many adolescents and young adults (AYAs; 10-24 years old) are excluded from HIV research because of social, ethical, and legal challenges with informed consent, resulting in limited AYA-focused data. We use a participatory approach to identify strategies for improving AYA consent processes in HIV research in low- and middle-income countries (LMICs). Methods We conducted a digital crowdsourcing open call for ideas to improve AYA consent to HIV research in LMICs. Crowdsourcing involves engaging a group of people in problem-solving, then sharing emergent solutions. Submissions were evaluated by 3 independent judges using predefined criteria, with exceptional strategies receiving prizes. Demographic data were collected, and textual data were qualitatively analyzed for emergent themes in barriers and facilitators for improving AYA consent in HIV research, guided by a socioecological model. Results We received 110 strategies total; 65 were eligible for evaluation, 25 of which were identified as finalists. Fifty-eight participants from 10 LMICs submitted the 65 eligible submissions, of which 30 (52%) were 18 to 24 years old. Thematic analysis identified 10 barriers to AYA consent, including HIV stigma, limited education, and legal/regulatory barriers. Strategies for improving AYA consent processes revealed 7 potential facilitators: enhancing AYA engagement in research, involving parents/guardians, improving education/awareness, improving institutional practices/policy, making research participation more AYA-friendly, enhancing engagement of other key communities of interest, and empowering AYA. Conclusions Diverse communities of interest in LMICs developed compelling strategies to enhance informed consent that may improve AYA inclusion in HIV research. These data will be used to develop practical guidance on improving AYA consent processes.
AB - Background Many adolescents and young adults (AYAs; 10-24 years old) are excluded from HIV research because of social, ethical, and legal challenges with informed consent, resulting in limited AYA-focused data. We use a participatory approach to identify strategies for improving AYA consent processes in HIV research in low- and middle-income countries (LMICs). Methods We conducted a digital crowdsourcing open call for ideas to improve AYA consent to HIV research in LMICs. Crowdsourcing involves engaging a group of people in problem-solving, then sharing emergent solutions. Submissions were evaluated by 3 independent judges using predefined criteria, with exceptional strategies receiving prizes. Demographic data were collected, and textual data were qualitatively analyzed for emergent themes in barriers and facilitators for improving AYA consent in HIV research, guided by a socioecological model. Results We received 110 strategies total; 65 were eligible for evaluation, 25 of which were identified as finalists. Fifty-eight participants from 10 LMICs submitted the 65 eligible submissions, of which 30 (52%) were 18 to 24 years old. Thematic analysis identified 10 barriers to AYA consent, including HIV stigma, limited education, and legal/regulatory barriers. Strategies for improving AYA consent processes revealed 7 potential facilitators: enhancing AYA engagement in research, involving parents/guardians, improving education/awareness, improving institutional practices/policy, making research participation more AYA-friendly, enhancing engagement of other key communities of interest, and empowering AYA. Conclusions Diverse communities of interest in LMICs developed compelling strategies to enhance informed consent that may improve AYA inclusion in HIV research. These data will be used to develop practical guidance on improving AYA consent processes.
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UR - http://www.scopus.com/inward/citedby.url?scp=85190753303&partnerID=8YFLogxK
U2 - 10.1097/OLQ.0000000000001949
DO - 10.1097/OLQ.0000000000001949
M3 - Article
C2 - 38346417
AN - SCOPUS:85190753303
SN - 0148-5717
VL - 51
SP - 359
EP - 366
JO - Sexually Transmitted Diseases
JF - Sexually Transmitted Diseases
IS - 5
ER -
